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Kids Hut Test!!!?


anna
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Hello my dear wise people, I have a number of Q for you regarding some odd goings on at my kids tilt test.

Firstly one of my boys had a Tilt this morning, he had all the leads put on and a canular put in then was made to relax for 15 mins to counter any odd readings from that procedeur but cardio tech's talked to him and me, then son was stood up where he managed to say sort of still for a short while about 10 mins then he just keeped pumping his leg muscles and tummy, something he always does when stood up too long! anyway after about 20 mins he got more dizzy and through up. So Dr. called an end to test and explained as the test did not go on for the full 50 mins thus it was inconclusive! The Dr. was behind the tilt table all the time of the test writting up notes, so did not see how my son looked at any time during the test. I was lucky to be able to veiw the moniter sons BP did not go down much but his HR went from 50-60 flat to 90-100 when upright while still but dropped to 70-80 when he figgeted (sp). as they took the table down I commented on how odd my sons arms and legs looked, from elbows down son was very red, from elbows up he was white, I asked Dr. about this and he said it was very odd and he was not sure why this had happened!! When son lying down for a while he got a nice even colour back, no comment from Dr.

Then Daughters turn I was made to leave as Dr. really wanted to follow proper protacal!! she managed about 15 mins before they called the test off because my daughter could not stand it any longer, she came over very hot, toungue and side of face went numb, arms got very twitchy, legs felt very odd, she then felt heart in neck and got very brethless. I was called in and Dr. said sorry but test was also in conclusive, as it showed no major drops in BP and no major tachy. as I was not in the room I will have no idea of the readings but I can bet her HR was quit a bit higher standing than when lying, as it is when ever I have checked it. Daughter and son both very tierd after TT.

I suppose I want to ask you folks what you think about my kids reaction to the tilt test does it sound in any way a POTS type responce??

Anna

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In my opinion even though your sons hr didn't go above 100, it sounds like it could be POTS. It did go up 30 bpm. Do you know what his vitals were when he vomited? Not knowing your Daughters vitals it would be hard to tell, but I'm guessing your intuison tells you what's going on. Listen to it. My first TTT was nagative. It took 2 years before I finally got diagnosed. I knew all along this is what was wrong with me. However the Dr I had didn't understand POTS. He himself admitted as much.

Maybe you'll need a second opinion, I would ask for copies of the TTT and take it to another Dr.

Best luck to you and your little ones. (((HUGS)))

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I agree with Amby. By sheer numbers alone, your son has POTS. His HR went up over 30bpm. My son also vomited during his TTT, right before his BP dropped to nothing. Did your son have a corresponding BP drop? If so, he may also have NMH. Even if he didn't, the POTS alone can cause that horrible nausea/vomiting.

Your daughter also had a very dysautonomic response....I'd definately ask for a read out from her test. You can see for yourself is her HR went up more than 30BPM or if her BP flucuated horribly.

Where did your kids have the TTT done? A friend of mine had her child's test done at a very prestigious hospital in Chicago. The docs claimed it was "normal," despite his horrible symptoms. She took her child to Mayo, where the docs didn't even have her son repeat the TTT as his HR jumped mpre that 30BPM in the office during a consultation. It is vital that the doctors have an understanding of POTS/NMH before they do the test.

All the best to you. Hugs to your kids. They were really brave..and how hearbreaking to still not have a DX. Keep searching for answers, MOM.

Julie

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I would most deft. get the print out of the test and get another opinion and explain the symptoms you observed during the test.

What you described are symptoms I had during my test, esp. the second time. I had not only the nausea, awful dry heaves, lightheaded, unable to speak, but also went numb in legs and arms-- didn't have the numbness the first time. The first time I passed out quickly and BP and HR both just dropped. Second time, I had been on beta blocker and it was a half hour of horrible symptoms and near syncope. This time BP and HR went both up and way down.

Diagnosed with NCS and had tests at 2 dift centers. The first time I had two techs. that sat in front of me and made note of everything I was feeling, as well as vitals and their observations. Then had physician flying in as I passed out so quickly.

Second time I had three people in room. 2 techs -one behind me doing vitals and writing and one beside me-holding up that lovely vomit catcher- sorry - as well as EP/Cardiologist who was watching me and talking to me the entire time ,as well as watching all the monitors.

They were very brave and I hope they don't have to repeat it! Hope you are able to get some clarification ---

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